Rheumatol Int (2014) 34:165–170 DOI 10.1007/s00296-013-2934-6
ORIGINAL ARTICLE
Standards of care for patients with spondyloarthritis Miguel Ángel Abad · Rafael Ariza Ariza · Juan José Aznar · Enrique Batlle · Emma Beltrán · Juan de Dios Cañete · Eugenio de Miguel · Alejandro Escudero · Cristina Fernández‑Carballido · Jordi Gratacós · Estíbaliz Loza · Luis Francisco Linares · Carlos Montilla · Manuel Moreno Ramos · Juan Mulero · Rubén Queiro · Enrique Raya · Carlos Rodríguez Lozano · Jesús Rodríguez Moreno · Jesús Sanz · Lucía Silva‑Fernández · Juan Carlos Torre Alonso · Pedro Zarco · José Luis Fernández‑Sueiro · Xavier Juanola · 2e study group ·
Received: 28 June 2013 / Accepted: 21 December 2013 / Published online: 4 January 2014 © Springer-Verlag Berlin Heidelberg 2014
Abstract To define and give priory to standards of care in patients with spondyloarthritis (SpA). A systematic literature review on SpA standards of care and a specific search in relevant and related sources was performed. An expert panel was established who developed the standards of care and graded their priority (high, mild, low, or no priority) following qualitative methodology and Delphi process. An electronic survey was sent to a representative sample of 167 rheumatologists all around the country, who also gave José Luis Fernández-Sueiro: In Memoriam.
priority to the standards of care (same scale). A descriptive analysis is presented. The systematic literature review retrieved no article specifically related to SpA patients. A total of 38 standards of care were obtained—12 related to structure, 20 to process, and 6 to result. Access to care, treatment, and safety standards of care were given a high priority by most of rheumatologists. Standards not directly connected to daily practice were not given such priority, as standards which included a time framework. The standards generated for the performance evaluation (including patient and professionals satisfaction) were not considered
M. Á. Abad Rheumatology Unit, Hospital Virgen del Puerto, Plasencia, Spain
C. Fernández‑Carballido Rheumatology Unit, Hospital General de Elda, Alicante, Spain
R. A. Ariza Rheumatology Unit, Hospital Universitario Virgen Macarena, Sevilla, Spain
J. Gratacós Rheumatology Unit, Hospital Parc Taulí, Sabadell, Spain
J. J. Aznar Rheumatology Unit, Hospital de Mérida, Mérida, Spain
E. Loza (*) Instituto de Salud Musculoesquelética, InMusc S.L., Ofelia Nieto 10‑2ºB, 28039 Madrid, Spain e-mail:
[email protected]
E. Batlle Rheumatology Unit, Hospital Sant Joan d’Alacant, Sant Juan de Alicante, Spain E. Beltrán Rheumatology Unit, Hospital General Universitario de Valencia, Valencia, Spain J. de Dios Cañete Rheumatology Unit, Hospital Universitari Clínic de Barcelona, Barcelona, Spain E. de Miguel Rheumatology Unit, Hospital Universitario la Paz, Madrid, Spain A. Escudero Rheumatology Unit, Hospital Universitario Reina Sofía, Córdoba, Spain
L. F. Linares · M. M. Ramos Rheumatology Unit, Hospital Universitario Virgen de la Arrixaca, Murcia, Spain C. Montilla Rheumatology Unit, Hospital Virgen de la Vega, Salamanca, Spain J. Mulero · J. Sanz Rheumatology Unit, Hospital Universitario Puerta del Hierro, Madrid, Spain R. Queiro Rheumatology Unit, Hospital Universitario Central de Asturias, Oviedo, Spain
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especially important in general. This set of standards of care should help improve the quality of care in SpA patients.
governance process of any rheumatology unit and health system.
Keywords Standard of care · Spondyloarthritis · Quality of care
Methods Study design
Introduction There is growing evidence that there is great variability in rheumatic diseases management including spondyloarthritis (SpA) that may affect quality of care [1, 2]. Donabedian [3] proposed that healthcare quality could be measured by considering the structure, the process, and the outcomes of care. Based on that principle, there has been a trend toward developing national standards of care and good practice in many different specialties across the world [4, 5] to raise and harmonize quality of care and to enable equity of care. The number of initiatives to define and implement standards of care is increasing in rheumatology, still low though [6, 7]. There have been published some quality-related articles on SpA but at the moment, to our knowledge, there is no proposal on standards of care for this group of diseases. The aim of this initiative was to develop nationally accepted standards of care for persons with SpA, to obtain the best quality of care within the resources available, especially in the current context of economic crisis. This document is intended to help and support rheumatologists and other health professionals involved in SpA care by providing a statement of standard of care requirements for persons with these group of diseases. It can also act as the formal record of standards of care as part of the clinical E. Raya Radiology Unit, Hospital Virgen de las Nieves, Granada, Spain C. R. Lozano Rheumatology Unit, Hospital Doctor Negrín, Las Palmas, Spain J. R. Moreno · X. Juanola Rheumatology Unit, Hospital Universitari de Bellvitge, IDIBELL, L’Hospitalet de Llobregat, Barcelona, Spain L. Silva‑Fernández Rheumatology Unit, Hospital Universitario de Guadalajara, Guadalajara, Spain J. C. Torre Alonso Rheumatology Unit, Hospital Monte Naranco, Oviedo, Spain P. Zarco Rheumatology Unit, Hospital Universitario Fundación Alcorcón, Alcorcón, Spain J. L. Fernández‑Sueiro La Coruña, Spain
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A qualitative study, developed by the Spanish Society of Rheumatology, based on the quality methodology and Delphi process is presented [3]. Standards of care development An expert panel (n = 23) on SpA was established, and the definition of a standard of care was discussed. There is no medical definition for standard of care, although the term is firmly established in law and is defined as “the caution that a reasonable person in similar circumstances would exercise in providing care to a patient.” Therefore, standards of care are not guidelines or algorithms of care, but the panel agreed that they define what services or strategies are appropriate and suggest ways of providing them effectively in a measurable way. Some of the documents reviewed on standards of care were used as examples to develop this project’s standards. Then, a systematic literature review was performed looking for articles related to standards of care in SpA. We looked for studies retrieved by a sensitive search strategy for SpA, standards of care (mesh terms and text words) in MEDLINE, Embase, and Cochrane CENTRAL from the beginning up to October 2011. Selection criteria were predefined by protocol: studies of adults with SpA, evaluating standards of care. Meta-analysis, systematic literature reviews, randomized controlled trials, cohort studies, and case–control and qualitative studies were included. Title and abstract selection and subsequent detailed review of selected articles were independently performed by one reviewer. Afterward, a manual search was done to collect relevant and related information. This included national and EULAR consensus [8–12], clinical guidelines [13], Web sites (Spanish Ministry of Health, National Institute for Clinical and Health Excellence or eumusc.net project [14]), and other documents [15–17]. An expert methodologist on quality of care analyzed all of this information, classified it into possible structure, process, or result standard of care. Following, in a meeting with the panel of experts, this information was showed and discussed, and a first draft of standards of care was generated. For each standard, a subtext for explanations was added. Standardized documents and tables were used to continue developing the standards of care and subtexts. Following, the experts graded the
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priority of the standards of care using a Delphi process from high, mild, low, or no priority. Finally, an electronic survey was sent to 167 rheumatologists all around Spain. They also prioritized the standards of care using the same scale. In case of doubt or comments, they contacted the project methodologist. Different strategies were undertaken to assure maximum representativeness and response rate. Statistics We show the percentage of the priority for each standard of care (results from the experts and national survey).
Results The systematic literature review retrieved 15 articles on standards of care in rheumatic patients, but not specifically in SpA patients. But using the rest of information, a total of 38 standards of care were developed—12 related to structure, 20 to processes, and 6 to results. The areas covered include elements of holistic care as referral to the rheumatology service, outpatient services, composition of the multidisciplinary team, access to treatment, monitoring of disease activity, or performance evaluation and satisfaction. On the other hand, the survey response rate was almost 90 %. In Table 1, we show the structure standards of care and priority grade (of the experts and the survey results). More than 80 % of rheumatologists gave high priority to
the access to health professionals, tests, treatments, and a proper training on SpA (standards number 10, 11). On the other hand, a flexible time schedule to attend patients during the morning, afternoon or even the evening and the telephonic consultation were considered less important (standard number 4). Besides, electronic information systems (which include the electronic medical record) did not reach a high priority (standard number 6). Experts’ priorities did not clearly differ from the rest of the rheumatologists when analyzed separately, for these and the other standards. Following, Table 2 depicts standards of care related to process. We found a high priority (>80 % of participants) in the standards of care related to treatments and safety (standards of care number 19, 20, 23, and 24). These standards included a timely and appropriated access, prescription, and monitoring of evidence-based therapies for patients with SpA. However, other aspects that are not always directly connected to daily practice were not given such priority, as socio-sanitary cooperative programs, exclusive training programs on, or the academic programs at Medical Schools (standards 29, 30, 31). Moreover, although the standards that included a time framework (standards 13, 27), one for the referral of SpA patients and the other stated to define when to review protocols or programs, were considered important, their priority was between high and mild. Finally, result standards of care were, in general, not considered as a high priority (Table 3), at least compared to the structure and process standards, especially those
Table 1 Structure standards of care for SpA No. Standard of care
Priority High (%) Mild (%) Low (%) No (%)
1 2 3 4 5 6 7 8 9 10 11 12
Units providing care to SpA patients should have an appropriate physical infrastructure and technical equipment Units providing care to SpA patients should have a care plan; clinical protocols based on the evidence and quality programs related to SpA The access and the localization of the units should be clear and appropriate There should be a flexible time schedule to attend SpA patients Units should guarantee SpA patients privacy There should be an electronic information system in the units providing care to SpA patients SpA patients should have a medical doctor responsible of their care SpA patients should have access to nursing care There should be an administrative officer to manage agendas; appointments; and waiting lists SpA patients should have access to other health professionals involved in SpA care; tests; and evidence-based treatments (pharmacological and non-pharmacological) Health professionals providing care to SpA patients should have access to proper and standardized training program on SpA
70.6
23.9
3.4
0
74.8
24.3
0.9
0
50.4 19.1 73 46.1 73 34.5 29.6 81.7
40.9 44.3 25.2 39.1 25.2 52.2 35.7 16.5
7.8 30.4 1.7 13.9 1.7 12.4 31.3 1.7
80.9
18.3
0.9
There should be access to telephonic consultation
15.8
60.5
20.2
0.9 6.1 0 0.9 0.0 0.9 3.5 0 0 3.5
Results come from the survey and experts priorities
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Table 2 Process standards of care for SpA No. Standard of care
Priority High (%) Mild (%) Low (%) No (%)
13 12
57 72.2
36.8 26.1
5.3 1.7
0.9 0
74.6 66.1
21.9 32.2
3.5 1.7
0 0
74.8
23.5
1.7
0
79.1
20
0.9
0
87.6
11.5
0.9
0
90.4 67.3 67.5 83.5 90.4 71.3
8.8 30.1 31.6 17.4 8.7 27.8
0.9 2.7 0.9 0.9 0.9 0.9
0 0 0 0 0 0
26 27 28 29 30 31
Patients with possible SpA should be referred to the units within 30 days Activities: programs, or plans to promote and increase knowledge on SpA should be generated and implemented Validated classification criteria of SpA should be used A report with the diagnosis and treatment should be generated for the primary care physician responsible of the patient A systematic evaluation of SpA patients (at least once a year) to measure activity; impact on function and quality of life; prognosis; and response to treatments should be performed and data registered SpA patients should receive appropriate and individualized information and education about the disease; treatments; prognosis; and other relevant information SpA treatment should be based on disease activity and severity; other relevant clinical and prognosis factors; as well as on patients preferences and expectations Pharmacological and non-pharmacological treatments should be provided as soon as possible SpA patients should actively take part into the decision making regarding treatments and tests Evidence-based treatment protocols should be followed If the treatment objective/goal is not achieved in 3–4 months, the treatment should be revaluated Close and standardized adverse events monitoring should be done Multidisciplinary care should be considered for patients with SpA and extra-articular involvement SpA patient should have a rapid access to care in case of worsening of the disease or emergency Implemented activities: programs or plans should be reviewed and updated at least annually Patients; their families; and/or carers should be treated respectfully SpA should be a target for academic programs at Medical Schools and for rheumatologists Socio-sanitary cooperative programs should be developed Exclusive training programs on SpA should be offered
73.9 42.1 65.2 48.2 14.8 28.7
23.5 47.4 28.7 43.9 60.9 50.4
2.6 9.6 6.1 6.1 22.6 20
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SpA should be included in the providing care to SpA patients clinical sessions
66.7
30.7
2.6
15 16 17
18 19 20 21 22 23 24 25
0 0.9 0 1.8 1.7 0.9 0
Results come from the survey and experts priorities
Table 3 Result standards of care for SpA No. Standard of care
Priority High (%) Mild (%) Low (%) No (%)
33 34 35 36 37 38
SpA patients satisfaction with provided care should be evaluated Health professionals satisfaction with their work should be evaluated A systematic; critic; and scheduled evaluation of the unit activity regarding SpA patients should be performed A systematic; critic; and scheduled evaluation of health professionals providing care to SpA patients should be performed A systematic, critic, and scheduled evaluation of activities, protocols, and plans should be performed
23 22.6 38.4
55.8 53 46.4
21.2 24.3 15.2
0 0 0
25
48.2
25.9
0.9
37.2
51.3
11.5
0
A systematic, critic, and scheduled evaluation of residents and other health professionals training 38.3 programs on SpA should be performed
52.2
8.7
Results come from the survey and experts priorities
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0.9
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proposed to evaluate patients and professionals satisfaction (standards 33 and 34), in which 21–24 % of rheumatologists gave them a low priority.
Discussion We have presented a set of nationally developed standards of care for patients with SpA based on best evidence and experience. In today’s healthcare climate of audit, variability in daily practice, clinical effectiveness, and increased public accountability, the aim of ensuring the quality of the entire care experience has never been more explicitly stated [2, 18]. Improving care depends on identifying the main gaps between optimal and routine practice, identifying strategies to bridge these gaps, and developing policies to implement these strategies in a rapid and cost-effective manner. Standards of care are generated to define optimal care [3, 14]. In our set of standards of care, there are some that deserve some comments. Regarding the structure standards of care, most of rheumatologists gave high priority to the access to trained health professionals, tests, treatments, and technical equipment that is necessary in order to guarantee a good service. But, interestingly, electronic information systems (which include the electronic medical record) did not reach a high priority. We did not analyze this issue deeply, but this may reflect a growing concern about electronic information systems. Each region or even each hospital in our country has a different one, and not always compatibles. Moreover, most of them (especially electronic medical records) are not properly designed for rheumatologic daily practice. Therefore, although their potential benefits are unquestionable, they may not help as much as supposed to. As expected, regarding the process standards, rheumatologists gave the highest priority to those related to treatments. Probably not only because this is a key point in the process of care, but also because during this economic crisis, some treatments financed by the health system could be no longer provided in the future or their indications restricted. But possibly the most interesting finding comes from the fall of priority in the subset of result standards of care. The purpose of these standards in general, but mainly those related to the performance evaluation, is not to criticize, but to assess where improvements could and should be made. Thus, the standards should be considered a challenge to the services involved in SpA care rather than a threat. Unfortunately, sometimes they are not considered this way. In summary, in order to improve quality of care in SpA patients, service providers, support groups, policy makers,
and patients and health professionals themselves should work together to develop a framework for managing SpA. This framework should take account of the chronicity of these disorders and the current changing environment for the delivery of health care. This set of standards of care will help achieve this goal. Conflict of interest None.
Appendix: 2e study group José Manuel Martín Santos; José Ángel Cabezas Lefler; Carolina Diez Morrondo; José Luis Alonso Valdivieso; María Álvarez de Buergo; Ruth López González; Manuel Cipriano Martín Martínez; Mario Agudo Bilbao; Senén González Suárez; Tomás Tinture Eguren; Mª Edilia García Fernández; Juan Ignacio Villa Blanco; Laura Losada Ares; Javier de Toro santos; Carlos Fernández López; José Antonio Pinto Tasende; Ángeles Hernández del Río; Julio Vázquez Pérez Coleman; Tomás Ramón Vázquez Rodríguez; Susana Romero Yuste; Bruno Aspe de la Iglesia; Marina Rodríguez López; Jesús Ibáñez Ruan; Balbina Carmen González Álvarez; Luis Fernández Domínguez; Íñigo Hernández Rodríguez; Mª Dolores Miranda García; Montserrat Romero Gómez; Mª José Madrigal Domínguez; Belén Garrido López; Sergio Rodríguez Montero; Julia Uceda Montañés; Raquel Hernández Sánchez; Antonio Ponce Vargas; Sara Manrique Arija; Rosa García Portales; Pablo Manzano Fernández-Amigo; Mª José Pérez Galán; Mª Carmen Ramírez Barberena; Antonio Romero Pérez; Serafín Campos Sánchez; Reyes Martín Walls; José Luis de la Iglesia Salgado; Mª del Mar Ruiz Tudela; Inmaculada Macías Fernández; Rosario Cabeza Rodríguez; Rocío Solís Díaz; Ricardo Sanchez Parera; Rafael Cáliz Cáliz; Antonio García Sanchez; Miguel Ángel Ferrer González; Alfonso Gonzalez Utrilla; Miguel Ángel Doña; Manuel Castaño Sánchez; Deseada Plama Sánchez; Fernando Jose Rodríguez Martínez; Enrique Judez Navarro; Mª Jose Rubira Perez; Ana Climent Albaladejo; Marino Villalón Pla; Antonio Gracias Pérez; Carlos Feced Olmos; Rosa Hortal Alonso; Ana Martínez Cristóbal; Juan José Alegre Sancho; Arantxa Conesa Mateu; Francisco Pérez Torres; Alejandro San Martin Álvarez; Jose Miguel Senabre Gallego; Carlos Santos Ramírez; Raúl Noguera Pons; Mª Paz Martinez Vidal; Francisca Sivera Mascaró; Trino Pina Murcia; Fátima Álvarez; Cristina Luna; Alberto Cantabrana; Juan Carlos Quevedo; Jos′Ángel Hernández; Juan José Bethencourt; Mª Ángeles Gante; Vera Ortiz Santamaria; Asunción Acosta Pereira; Yolanda León Hernández-Rico; Elisabet García Casares; Patricia Moya Alvarado; Carolina Perez Garcia; Pau Lluch Mesquida; Silvia Paredes GonzálezAlbo; Josep Pujol Costa; Anna Pamies Corts; Mª José
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Poveda Elices; Carlos Tomás Roure; Miriam Almirall Bernabe; Delia Taverner Torrent; Joan Calvet Fontova; Julio Ramirez Garcia; Eulalia de Cendra Morera; Patricia Reyner Echevarria; Marta Valls Roc; Joana Rovira; Oriol Codina Guino; Sergio Ordoñez; Mª Bonet Llorach; Sandra Farietta; Meritxell Salles; Cayetano Alegre; Mireia Barcelo; Lidia de Prado; Jose Luis Morrel Hita; Mª Consuelo Diaz-Miguel Perez; Fco Jacier Bachiller Corral; Cristina Hidalgo; Mª Dolores Sanchez Gonzalez; Concepción Morado Quiñoa; Esther Toledano Martinez; Jose Luis Alvarez Vega; Jose Mª Salazar Vallinas; Maria Torresano Andrés; Puerto Moreno Gil; Antonia Ferreira Conejo; Antonio Cardenal Escarcena; Fernando Gamero Ruiz; Ángela Herranz Varela; Miguel Bernard Pineda; Laura Nuño Varela; Javier González Polo; Eva Tomero Muriel; Rebeca Belmonte Gómez; Hilda Godoy Tundidor; Inmaculada de la Torre; Mariía Alcalde; Carmen Barbadillo; Montse Corteguera; Marian Matias; Olga Sanchez; Teresa Gonzalez; Eduardo Loza Cortina; Ricardo Gutierrez Polo; Laura Garrido Courel; Loreto Horcada Rubio; Inma Paniagua Zudaire; Rosario Ibáñez Bosch; Jordi Pons Dolset; Mayte Bosque Peralta; Concha Delgado Beltrán; Carlos Armas Ramírez de Verges; Rosa Roselló Pardo; Chesus Beltrán Audera; Jesús Marzo Gracia; Valvanera Pinillos Aransay; Mª Luz García Vivar; Eva Galíndez Aguirregoikoa; Manuel Flores Torre; Joaquín Belzunegui; Belén Álvarez Ana Ruibal; Javier Arostegui; Isabel Mateo Bernardo; Mercedes Morcillo; Roberto Miguélez; Claudia Urrego Laurín; Manuel Fernández Prada; Eduardo Cuende Quintana; Mª Carmen Ortega de la O.
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